Author: Jen Rios

Optic Neuritis and MS Vision

I saw this email today when I woke up:

I was interested because I have had optic neuritis for the past 25 years. I was six months pregnant when I was first diagnosed. I was remembering that appointment. It was upstairs from my pediatrician. Dr. Skarf diagnosed me with optic neuritis in my right eye. I was totally concerned because there was a little gray area on the outside rim of my right eye. He told me not to be concerned because he has seen patients with black in both eyes! Mine was just a little gray area.

https://www.mymsteam.com/resources/optic-neuritis-how-does-ms-affect-vision

I haven’t even finished reading this article. I have optic neuritis in both eyes now. I just never would have imagined it would be THIS DIFFICULT 25 years ago?!!!!!

Dr. Skarf has since retired and I see my new neural ophthalmologist on May 27. I haven’t seen what my eyes look like now and I had a visual field test last year. I will get another one next year.

“My Feet Hurt” OR Sludge

This morning, when my Mon was changing the wedge to go to my right side, I just said, “My feet hurt.” My Mom, moved my wedge and began rubbing my feet.

I was able to fall back to sleep for a little while longer because of this. Sean told me a while back about Guardians of the Galaxy 3. He told me that it was Rocket’s backstory. Sean and my Mom watched it a couple weeks ago while I was pillaging. He told me when the Rocket wakes up and he says, “Hurt!” I thought of that scene as I said that this morning.

I’ve been without socks for three weeks and one day and it’s rough! My feet hurt and I think it’s because the blood in my legs is sludge at this point. I am going on the 22nd for an ultrasound of my legs. I’m not supposed to wear my compression socks for that appointment and I’m not even sure if they will be here by then.

This is brutal and my legs ache and I’m sure blood flow is not happening very well. I thought of this video and it’s probably at the 4:30 sec. mark which makes me think that’s how my blood is traveling:

It hurts!!!

Xfinity Commercial

Sean is here watching then NBA finals and I took my contacts out because my eyes hurt but I heard this commercial and I had to watch it:

It’s really like that?! It’s only now that Sean will tell me that I would’ve been a ‘bad mom’ if I let him go into preschool by himself. I was NEVER going to let him do that?!

3 Weeks

it has been three weeks since I saw Dr. Thibodeau and he told me NOT to wear my compression socks and my legs have been throbbing since!!!

My toe is better and I’m just waiting for the toe-less socks. I haven’t been without my socks since November 2022. That was when I was getting over my pressure sores on my heels.

I had a specific conversation with God for those eight months. Looks like I need another one because these three weeks are a bit rough!!! It is three weeks and counting because they won’t ship them out until Monday – maybe…

Not to be Borne

The song randomly showed up on my Apple Music:

I was actively working out at Barwis when this song came out. That was more than a decade ago. I really thought that I was going to walk I was trying my hardest. But I guess it was not to be borne.

Hearing this song right now made me bawl my eyes out!!! It’s all different now. Homebound-ness takes his toll for sure… I don’t leave my house until May 20 for a haircut, May 22 for an ultrasound on my legs and May 27 for an appointment with my neural ophthalmologist before I get my Covid shot.

To Suffer

My Mom spoke to Befitting You today. They do not have an email to send the script to. We just have to wait for the fax to come through. Sean thought that was crazy, but I told him compression socks are for older people so they can deal with that delay.

I remember my first year teaching, I asked where the fax machine was, and my colleague, Mrs. Cochran told me that that was nothing anymore.

Well, it looks like I will not get my socks before Monday. They will ship out on Monday… maybe… in the meantime, I will just have to suffer with my throbbing legs!!!

Throbbing

So, yesterday when my Mom ordered the socks for me, she was told if she gets a script from my doctor there would be a small discount. The podiatrist prescribed that in January. His office called my Mom today.

The woman she spoke to put the script on MyChart for me so I have a copy as well. So, tomorrow my Mom will call Befitting You to see if they’ve shipped my socks out.

So maybe I’ll have socks by Friday. But it really doesn’t matter because my legs have been throbbing so much! My Mom asked me how long they have been throbbing, and I told her since Dr. Thibodeau told me not to wear them so my toe would heal. So it’s healed, but my legs are throbbing!!!

Modified

My brother, Ray, bought me and my Mom Girl Scout cookies when it was cookie time. It was during Lent. I did not eat my cookies. That is until last night.

But my Girl Scout cookie eating is modified now. I remembered that I would buy them from whomever’s daughter was a Girl Scout when I was working and I would get three or four boxes of Thin Mints. I would put them in my freezer. And save them for emergencies.

When I would have a pretty stressful day, I would pull out a box of Girl Scout cookies, and take out one roll of the cookies. I would eat the entire roll in one sitting!

I no longer can eat like that being a power chair user. I don’t move all day so I can’t have that much sugar. But I have decided to just have three cookies a day. I don’t get weighed until September so I think it will be okay.

But, in full disclosure, I had six cookies yesterday.

Rando Tune #86

I saw this email yesterday when I woke up:

I couldn’t remember why that line was so familiar. I thought it was a Pink! song but it turns out it’s Natasha Bedingfield:

So, I had a bunch of memories with this song. But it didn’t come out until 2004. I was still living with my Parents then and I was still an undergrad in college. This song wasn’t even written when I think about what it makes me think of:

Sean was young. Still in a car seat carrier. So he was less than 20 pounds. I placed the car seat on the porch of my Parents’ house and I fumbled with the keys just as it was starting to rain.

I covered Sean with the hood of the car seat as I was trying to open the door. Well, some raindrops landed on his legs and he was so young he could not understand what was going on! He just let out a soft whine. I assured him that I was trying to open the door and then we got into the house.

I’ve never forgotten that moment when he startled at notwanting to feel the rain on his skin. That’s why I was thinking something was important with that line. That seems so long ago! I was still driving and I was still walking back then. And that feels so far in the past it kind of hurts I think but I remember that it happened.

Joaquin Phoenix’s Lip

As for the pock in my Chapstick:

I’m surprised to say that it wasn’t bumpy at all! It kind of compressed itself and I barely felt any difference. I am almost finished with it and I can’t take a picture because at this point, I cannot control my hands enough to do that.

I actually have been thinking of it as Joaquin Phoenix’s lip. I didn’t even realize anything was wrong or different about his mouth until I was teaching! I didn’t notice anything when he was a kid in Parenthood or even in Gladiator.

So, my chapstick is no big deal. I will change over to a new Pomegranate when it’s finished.

This weather is absolutely terrible for me and I’m having difficulty dealing with it. My internal temperature does not know what to do right now and that confusion is painful I think.

But, on a happier note, my Mom ordered toe-less compression socks for me on Monday. I’m excited that my legs will stop throbbing but I am a little bit concerned about my exposed toes?!!!